“ it’s not you, it’s me “

Friendships are always a two way thing. Being consumed in your own problems may drain other people and that may be part of their fear. In the past I have been drained by people I tried to support so I then withdrew from them. You need to maintain interest in their seemingly trivial problems. Having shared interests in common that do not involve talking about either parties problems does you both good.

Nearly all my friends and contacts know I have been ill but in the early stages there was still hope it was treatable. Now I have to tell them my time is limited but I am doing it gradually. Some I am blunt with, some I just say I'm continuing treatment which is true. I can see from the few I have told that they still want to believe it as a far off event. Maybe I am being too pessimistic myself but I am trying to get everything in place as soon as possible.

Tessa

Dear tessa, I think you have a pragmatic approach to this dilemma, in the early days after diagnosis when you are at your most vulnerable it’s understandable that one might feel wounded by seemingly unsympathetic reactions, but as time goes on it’s possible to be more forgiving about other people’s inability to deal with the implications of your prognosis. Perhaps when society as a whole is more comfortable with talking about death it will be easier for all of us whether we be friends, or relatives. Thank you for your contribution, I have benefited greatly from your musings.

Incurable cancer is a difficult thing to deal with and I think we need to cut people some slack if they don’t get it quite right. I get annoyed when I’m told to be positive as if they’re saying something profound and original. The uncharitable view is that people want you to be in denial so they won’t have to think about your illness. The kinder view is that people are terrified of cancer and just hope that if they get it they will find reserves of strength they didn’t know they had or that somehow positive thinking can affect the outcome. I tend not to say very much to people outside immediate family because I don’t want to give them an opening to tell me what to do, or worse, what to think. That’s why I’m so pleased to have found this group because I don’t have to censor myself. 

Dear maybug, Im so glad you are benefiting from being a valued member of the end of life group. I think it’s so important for people in our position to be able to talk freely about the issues that are effecting us. I spend so much time minimising my situation to spare the feelings of others that coming to a place where I can be me and share my thoughts and feelings, my up and downs and try to provide resources to my fellow travellers that they may find useful or empowering very therapeutic. I’m sure there are many people who read our posts who are not members and I hope they are granted an insight into the challenges that we all face and that this creates a better understanding. I think of my self as a rechargeable battery that needs a negative and positive charge to work, so it’s ok to feel the full gamut of emotions about your prognosis, it’s natural and healthy. Thank you so much for your contribution.

I found after to trying to come to terms with my diagnosis myself that when I was ready to let friends know that their reactions differed, a friend of 30 years shunned  e after initially being told.  She told me it was up to me to contact her as she didnt want to bother me.  She then disappeared  completely.  I realised that she is scared of my  cancer. I know it is one of her biggest fears. It was mine as well. My mother in law wont speak to me. When I answered the phone at home she wanted to speak to my husband who was out of the time. She never asked how I was or felt the need to chat to me,, in fact she couldn't get off the phone quick enough.  I dont now tell many people  because I dont want to see their fear and sympathy.  At the end of the day we have not  changed the person we are. We want life as far as possible to carry on as normal.  I fear though that people expect us to bedridden and not have the energy to do anything. That may well  9me  it not just yet.  People are so scared that they cant see beyond the cancer.  Would I react any differently, I hope I would have.

Dear Ellie, nothing you have said surprises me, I guess that’s why I started the thread so forum members could tell their own stories of disappointing reactions. The subject of death is such a taboo and while that remains people will prefer to run away than face up to their own mortality. It’s a sad situation but the intention of my post was to let others know it’s not about them and I hope that’s what i did.

Dear Ellie

Like Johnty, I am no surprised by what you told us in your post. I am disappointed that both your mother in law and long term friend aren’t more supportive and appear to put their fears above supporting you. I have had some similar instances where people are clearly uncomfortable asking me how I am but the majority of friends, family and colleagues have been great. I tend to be very open about my condition as I feel I want people to see that people like us are still part of society and while we may need some adjustments made we don’t need to be handled with kid gloves. I know this doesn’t work for everyone and as I’ve said I do get adverse reactions from some people from time to time but as Johnty’s title of this thread says, it’s not me it’s them. Having this site is great as well as I feel the community are very supportive of one another and I can be even more open about things and there is no fear of being judged. Take care and remember there are lots of us on this site who do understand and care.  

Hi

Jane this is something I have been struggling with for six years now! I will never forget the look on our son & daughters faces! I felt as if I had stabbed them in the back when we told them my prognosis but my fantastic husband explained it wasn't "our choice", and we felt the same devastation as they did. Also there was a trial drug I might be able to get access to! My friend of forty years, cried and hugged me. Then I didn't see or hear from her for about four months! Eventually, I turned up at her door and asked could we talk! Turned out she didn't want to loose her best friend and couldn't cope with it! I then tried to explain how I felt, that I had lost my best friend already, as I couldn't have a coffee & chat with her. I emphasised the chat would be about normal things, not cancer, but also if she wanted to ask me anything, I would answer honestly. I said once/if I got very ill, I didn't expect her to visit but maybe a quick text would be great, if she could manage that! Things haven't changed much over the years since dx and she now thinks I'm "cured" because I'm not on treatment. I don't mention regular scans or appointments, or the op I've to have a week on Wednesday, as it makes things easier for her!              For me it's not easy!

My brother died of the same cancer as me (Malignant Melanoma) when he was 43. I haven't heard from my sister in law, or two neice's since dx. I understand how hard it must be for them. I have two sisters, who both live about 30 minutes away, one who calls to ask how I am & we occasionally go out for lunch. The other, I've seen three times this year, who also thinks I'm cured! You are right, it's not us, it's them. They have no concept of what incurable cancer means but I'm not going to be the one to burst their bubble!

The friends I've made "here" are very important to me! Honestly, without all you lovely people, I know things would be a lot different! People see me & my husband at coffee shops etc with our grandchildren but don't see me struggling with the pain, for the immediate days following an outing! Oh! Isn't ignorance Bliss! 

Oh I'm so sorry, it wasn't until after I had posted my reply that I realised it was from the Sub Group and not the main group! I seldom reply here but this is a subject that in some ways has been harder to discuss for me than cancer. I was going to delete my reply but I'm sure admin may decide to do it for me! Sorry!

Dear Annette, don’t worry about having posted in the end of life group, your contribution to this subject is still valid. As I have mentioned in a previous thread the line between the two groups is somewhat blurred, I think it’s just a subject matter thing. Some things are better discussed here rather than in the incurables, but effect us all one way or another over time. It was sad but not surprising to read of your experiences, I regularly see the fear in people’s faces when they see me unexpectedly, its like I’m radioactive ! But I’m a very good actress and usually manage to put on a show of normalcy to put them at ease ! I agree the forum is a great outlet for feelings that can’t be expressed anywhere else and important for our emotional well being.